Helming in Albany for public hearing on Lyme disease

A public hearing on tick-borne diseases included testimony from health officials, patients, physicians, professors and scientists.

By Julie Sherwood jsherwood@messengerpostmedia.com

A public hearing on tick-borne diseases in Albany included testimony from health officials, patients, physicians, professors and scientists.

State Sen. Pam Helming, R-Canandaigua, released details of the hearing she attended as a member of the Senate Task Force on Lyme and Tick-Borne Diseases. The task force is led by Sen. Susan Serino, R-Hyde Park.

“My colleagues and I on the Senate Task Force on Lyme and Tick-Borne Diseases heard testimony from terrific panels of people with wide breadths of knowledge and expertise about these diseases,” stated Helming. The task force heard from people who are suffering and have suffered from Lyme and tick-borne diseases, as well as physicians who are treating patients, researchers who are developing prevention and treatment measures, and public health professionals who are seeking to raise awareness about these diseases, she stated.

Dr. Zucker and two of his staff members — P. Bryon Backenson, deputy director for the Bureau of Communicable Disease Control Center for Community Health, and Dr. Ronald Limberger, director of the Division of Infectious Diseases —spoke about the nearly 10,000 cases of tick-borne disease infections, including Lyme disease, reported to the department every year as well as methods of prevention and testing protocols.

The panel spoke at length about its role in setting standards for laboratory testing and related challenges, research that is currently underway, and collaboration among multiple state agencies in raising awareness about these diseases.

Dr. Zucker also mentioned informational videos available on the department’s website as a resource for New York residents to learn about tick prevention and proper removal. These informational videos were heralded by many other participants at the hearing.

In response to a question from Helming, Zucker said the Department of Health has plenty of funding and that there is already a lot of collaborative research under way. However, the commissioner’s assertion about adequate funding was later refuted as several other speakers at the hearing emphasized the need for increased funding for public outreach, guidance for the medical community, and research to develop more accurate testing and effective treatment.

Representatives from the health departments of Dutchess, Putnam, and Broome counties called for more investment in public outreach. They mentioned putting resources toward education and tick kits, as well as raising awareness about all tick-borne diseases that are found in New York state— not just Lyme disease. These include other infections such as anaplasmosis, babesiosis, ehrlichiosis, and Powassan, which range greatly in severity, method of detection, and treatment.

Health department officials also confirmed an increasing awareness of and efforts to address mental health issues — including depression and suicide — many believe can be linked to these diseases.

A panel of patients shared their experiences with Lyme and tick-borne diseases, weighing in on the difficulty of being properly diagnosed, obtaining health insurance coverage for treatment and testing, and finding accurate information. Their testimony gave personal insight into what it is like to live with these diseases, including working with physicians who are not on the lookout for signs and symptoms of the diseases and are unaware of the complexity of diagnosis and treatment, which left an impact on their listeners.

Physicians representing Stony Brook Medicine, including Dr. Luis Marcos, the director of the Adult Lyme and Tick-Borne Disease Center, highlighted the need for further research on the diseases. Stony Brook Medicine is in Suffolk County on Long Island, an area of the state with one of the densest tick populations. Citing annual increases in detection of Lyme, ehrlichiosis, anaplasmosis, and babesiosis in Suffolk County, as well as two documented cases of congenital babesiosis, Dr. Marcos called for more funding to improve accuracy in testing to catch infection and start treatment earlier. Dr. Marcos also identified an ongoing lack of understanding of current testing methods by health care providers, as well as the need for clinical research and standardized clinical trials to better understand the debilitating symptoms associated with tick-borne diseases.

During the hearing, physicians, scientists, and other experts presented testimony on diagnosis, treatment, and prevention; insurance coverage; funding for public outreach; the prevalence of coinfections; patient education from community physicians; the limits of diagnostic testing; the need for more clinical research and clinical trials; and research on how to limit the tick population and exposure to ticks.

“This public hearing was really productive. The testimonies were all very informative, and I am thankful to have heard from such a wide variety of people,” stated Helming. “The stories and information that I heard will certainly allow me to shape my perspective on this issue. I will be looking to increase resources to combat Lyme and other tick-borne diseases, to increase awareness of ticks and how to prevent tick bites, to accelerate research, and to provide more comprehensive guidance to our medical community who are on the front lines of identifying and treating these often devastating diseases.”

I look forward to working with my colleagues to strategically address the problem of Lyme and tick-borne diseases spreading across the Finger Lakes region and New York state,” Helming stated.

Helming represents the 54th Senate District, which consists of Seneca and Wayne Counties, parts of Cayuga and Ontario Counties, and the towns of Lansing and Webster.